Victoria's funeral will take place at 12pm this Thursday 10th January 2019 at
Maungaraki Baptist Church,
164 Dowse Drive
(opposite the shops)
Maungaraki,
Lower Hutt
Hello everyone,
With the deepest sadness and huge heaviness in our hearts we are letting you know that Victoria has gained her wings last night in her sleep, comfortable and with us by her side. We are thankful for all the wonderful times we've had with her and for all your help, which made those moments possible. We ask you to respect our desire to grieve privately for now,
Victoria's funeral will take place at 12 midday this Thursday 10th January 2019 at
Maungaraki Baptist Church,
164 Dowse Drive
Maungaraki,
Lower Hutt
Thanks Vladimir and Maria
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Здравствуйте,
С глубочайшей грустью и тяжелейшим сердцем мы сообщаем, что Вика обрела крылышки вчера ночью; она ушла во сне, мирно, пока мы сидели рядом с ней. Мы благодарны за все те хорошие месяцы и дни, что нам с ней достались, и за всю вашу поддержку, которая подарила нам это время и воспоминания. Мы просим вас уважать нашу просьбу погоревать пока самим по себе, но мы в ближайшее время дадим знать о дате ее похорон, для всех, кто захочет с Викой проститься.
See Translation
Victoria is having liquid morphine through the syringe drive and steroids in tablets. She is more comfortable now, but we still need to top up it with morphine tablets. On Friday we were told by hospice team, that most likely she has days or weeks left.
She is sleeping most of the time at the moment. And eat a little bit and watch cartoons at the evenings.
So hug your kids right now without any reason and cherish every moments with them.
Maria
Photo taken 1 week ago on a picnic.
Keeping you and your family in my prayers x
Victoria is not feeling well this week. She is having big headaches ( even with morphine), vomiting, no appetite, low energy and sleepy. Today was especially bad day with almost no eating and just sleeping. Please, pray for her. Thanks, Maria.
Hello everyone!
We are happy to let you know that now you can buy Victoria's books at bebabo shops in Wellington and Auckland! These are great toy shops with very unique and interesting European toys. Liza Shieff thank you so much for this!
Bebabo store has two stores. One toy store is located at 1 Pompallier Terrace, Ponsonby, Auckland and another store is located at 97b Customhouse Quay, Wellington Central.
Also you can still order Victoria's books from us (we still have 200+ English ones and 60+ Russian ones) and she will be happy to sign them for you!
Thank you so much for everyone who already bought her books, it is really helping to save some money for her ideas and wishes! And she is so proud that it is her earned money! ( some of them is to sponsor the special dog in Africa and save cheetahs ( she already sponsored one and would like to do another one), to plant more flowers and veggies and trees in our garden and for trips around the country).
Victoria is so excited to be like a real author :
1- Hungry Little Dragon goes on a food hunt (English language, 10 pages)- $15
2- Путешествие Кузи (Russian language, 16 pages)- $18
If you would like to buy her books, please pm me (Maria Vysotskaya) with details (which one, how many, delivery option and address)
Books can be picked up from Maungaraki, Lower Hutt or will be posted in prepaid bag (6 $).
We will post them couple of times a week (probably Monday and Thursday).
Victoria had a lovely trip to Taupo: she visited her favorite prawn park, Lava Glass, Pottery shop ( really liked to watch how clay become some wonderful things, she can watch it for ages) and Mosaic cafe. We visited Wai-o-Tapu this time and she liked the Lady Knox geyser. Also she really like the little cruise to the Huka falls and even was allowed to steer the wheel!
We also had spend some time in Rortorua-she rode 6 times on the Luge- so it is her personal record (she could keep going wanted one more, but they had to close :)).
After we got back Victoria did two visits: 1- to her school library and she gifted 5 of her books to Maungaraki school! Thank you so much Mrs. Long for organizing it and for all your support!
2- to her kindy- where she read her book to the kids and gifted another 5 of her books. She really enjoyed doing the reading and explaining and showing the pictures! Huge thank you to our kindy (Gracefield Early Childhood center) for fundraising that they did for Victoria ( and to everyone who supported it)! You are just great!
Thanks again for all of your support.
Hello everyone,
It's been a while since we last posted, so an update is long overdue. Victoria has thankfully been keeping fairly steady, and while at times she does feel under the weather and gets irritable and downright grumpy, most days she is still feeling reasonably well. This gives us an opportunity to take on her on trips, do interesting things and spend enjoyable time together.
Let's see what she's been up to:
Shortly after she managed to get on TV with her books, we travelled to Auckalnd for an MRI (which unfortunately showed that disease is progressing), but we decided to spice it up and rather than flying there we went on a roadtrip through Napier, Taupo, Rotorua and finally Auckland. It took us about a week for this trip and managed to do a lot of exciting things on the way. In Napier Victoria visited the Aquarium, in Taupo she got to swim in the hotpools, in Auckland she caught up with friends and went to Butterfly Creek (the actual hospital visit seemed like a short interruption in all the fun). Most of the time we ended up spending in Rotorua and we want to say a big thank you to Mike and Anya of Asure Palm Court and to Tim and Shelley of RotoVegas Motel for not only letting us stay at their motels (both on our way up to Auckland and back), but also for organising a whole lot of interesting and pleasant stuff to do. Thanks to them and to all the lovely people in Rotorua Victoria (and us of course) got to go for free to Paradise Valley, Agrodome, went up on the Skyline gondola, had lovely lunch up there with a great view, rode the Luge, went for a treewalk in Redwood forest (she actually really surprised us by managing to walk all the way - not easy as she gets tired easily).
We've noticed that these trips seem to have an uplifting effect on Victoria (even if she does get pretty tired in the process). So since returning from that big roadtrip, we've been keeping as active as possible, trying to visit fun places around Wellington area and going on (shorter) trips. We have visited Whanganui and Hawera, went on another trip to Napier and are hoping to go on another trip to Taupo soon. We also visited the botanical gardens, Staglands, Aston Norwood Gardens for the cherry blossoms and Victoria's even been helping in the garden thanks to good weather we've had (she's even managed to dig up some potatoes, which was one of her wishes:)).
We also want to say a big thank you to Matt Banks for organising the fundraiser bonfire for Victoria and for organising a big garden tidy-up at our place and to everyone who has helped with it. Seeing a much tidier garden lifts the mood and makes us want to spend more time outside in it. As I mentioned even Victoria got into the gardening after that (oh she loves helping with gardening work) and planted some strawberries and herbs.
Thank you to everyone else for all the support we're seeing from you all, and for making this difficult time better.
----
Здравствуйте,
Мы давно уже не выставляли новостей, так что пора и выставить. Вика, к счастью, пока держится без особых ухудшений, и хотя иногда чувствует себя неважно, легко раздражается и периодически сильно вредничает, по большей части самочувствие у нее неплохое. Это дает нам возможности ездить в небольшие поездки, делать всякие интересные вещи и приятно проводить время вместе.
Вкратце о том, чем Вика занималась последние пару месяцев:
Вскоре после Викиного теле-интервью о ее книжках, мы отправились в Окленд на МРТ (к сожалению оно показало, что болезнь продолжает развиваться), но на этот раз вместо того чтоб лететь, мы устроили большую поездку на машине, с остановками в Нэйпиере, Таупо, Роторуа и конечно Окленде. Вся поездка заняла примерно неделю, но зато нам удалось сделать кучу всего интересного. В Нэйпиере Вика побывала в Аквариуме, в Таупо искупалась в горячих источниках, в Окленде пообщалась с друзьями и съездила в Butterfly Creek (в результате само пребывание в больнице ощущалось больше как короткий перерыв в развлечениях). Большая часть времени у нас пришлась на Роторуа, и нам хочется сказать отдельное спасибо хозяевам Asure Palm Court и RotoVegas Motel за то что они не только радушно приняли нас в своих мотелях, но и организовали целую программу развлечений и приятностей. Благодаря им и замечательным жителям Роторуа, Вика (ну и мы конечно) бесплатно побывала в зоопарке Paradise Valley, в Агродоме, поднялась на гору на канатной дороге и приятно там пообедала и покаталась на машинках с горы (luge) и прошлась по дорожке, подвешенной между секвоями, в Redwood forest (она нас удивила, пройдя всю дорогу на своих двоих - это для нее было непросто, т.к. она быстро устает).
Мы заметили, что такие поездки прилично повышают Викино настроение (несмотря на то, что она в них и устает). Поэтому мы стараемся устраивать побольше таких выездов, иногда недалеко от дома, иногда подальше на пару-тройку дней. Мы уже успели посетить Вангануи, Хаверу, опять съездили в Нэйпиер, и надеемся, что получится скоро опять съездить в Таупо. Мы также побывали в ботсаду, Стэглендс, в саду Астон Норвуд на цветение сакуры. А дома Вика помогала в работе по саду, благо погода была отличная (Вика даже нарыла картошки - это было одно из ее желаний :).
Также мы хотим поблагодарить Мэтта Бэнкса за оргинизацию сбора средств в пользу Вики, а также организацию большой чистки нашего сада, и спасибо всем, кто в ней участвовал. Когда видишь более аккуратный сад, настроение повышается, и мы сами стали больше в него выбираться и садоводничать. Как я уже упомянул, Вика очень это любит и уже посадила клубнику и травы (петрушку, орегано, базилик и тд.), периодически их теперь из леечки поливает.
Спасибо вам всем за всю вашу поддержку, которая помогает облегчить это непростое время.
Maria Vysotskaya:
Victoria's just ticked her two very big wishes: to print her books (was written and illustrated by herself) and to be on TV.
Huge thank you to our social worker Lorraine and to lovely publisher lady, Briar, and to printer Tai Walters. And a big thank you to Hillary Barry with great cameramen from Seven Sharp.
Victoria is going to be on the 7pm news tonight on Seven Sharp TVNZ. She will be telling about her books.
Victoria is very excited and we are very grateful that these wishes were made possible!
And for all support that we have!
She was really happy to have 2 days trip to Masterton. We had visited alpaca place with friendly animals, watched two cartons ( There were only 15 people in small cinema!
That was what we need with Victoria's low immunity), checked the Cobblestones museum.
She loves to travel!
Victoria's Australian trip. Thank you so much,Make-a-Wish, and everyone who contributed to it! It was the best family time for the last 2 years and magic memories for us. And thank you, Yulia and Danil, for sharing this time with us. Victoria ticked 3 big wishes: go to Australia, see her favorite aunt and uncle and hug the koala.
Victoria was really happy to travel to Queenstown and play with snow. Thank you so much for all of your support and that her snow wish become true.
We are in Queenstown at the moment. Thank you so much everyone for financial support and Alena Vassilenkofor organizing special post about Victoria's snow wish. We will go to snow field soon and hope that Victoria will be happy to build the snowman.
Hi everyone,
Victoria enjoyed her cruise ship adventure, so thank you very much, who contributed to this trip (including "We help" group).
Unfortunately, her MRI result was much worse than our oncologist had though. After review with radiologists and other, they found out, that apart from 3 new big spots, there are lots of small spots in her brain and probably some in her spine.
So, her treatment was stopped, as it is not working. And radiation is not a option as well.
Basically, she is terminal and it is hard to tell how long she will be with us (several weeks or months).
We are heartbroken and devastated. It is a torture. But we need all of our strength to look after her and to do everyday tasks.
That is why we had traveled to Taupo and Rotorua last week and 1 day in Napier to make some of her wishes come true. (fish the prawns, swim in the hot pool, see Aquarium, visit Hobbiton, luge)
And we hope to travel to Australia next week to tick her big wish to see koala and platypus, thank you to Make-a-wish.
At the moment we are working on her bucket list and she is working on thinking about some wishes (some of them are: to see real snow and build a snowman and play snow balls, have cheetah encounter, visit some of her favorite places, jacket for her Pokemon, collect apples, eat nice creme brulee, organise a birthday for Hospi the lion (mascot of the Wellington kids hospital), and have a sweet party with her friends at home, have a high tea).
We are still researching what can be done to have more good time with her. But unfortunately, relapse medulloblastoma is deadly in most cases everywhere, here and in USA and in Germany, all around the world (except for small percent when this treatment worked).
Victoria already had operation to remove the tumor, 3 radioterapy cycles (30 session, 15 session and 5 high dose session), 9 month chemo with really high dose chemo, 8 month of MEMMAT chemo (with 3 weeks chemo each month, intracranial and intravenous well, and oral chemo 30 day in month and 6 tablet a day), 2 operations to place ports in her chest and her head.
We are aware of all available trials for this disease. Unfortunately, this disease is a beast!
And at the moment it is her well days, that we are counting.
So, please, be respectful.
Thanks, Maria.
Hello everyone,
Today we had a discussion of MRI results with our doctor. Unfortunately, it's not happy news: there are 3 new spots in the brain, which are not responding to current treatment. The doctor could not say exactly how quickly they are growing, but it is clear that current treatment isn't able to fully stop them. On Friday the oncology team will have a discussion between themselves of the MRI results and potential further steps, this means that we'll probably be discussing further treatment plan sometime next week. Most likely, radiation of affected spots will be recommended. As for stopping/switching current chemotherapy - this remains to be seen, since Victoria is tolerating it very well and the doctor thinks that there still might be some value in it.
Over the weekend we're going to be fulfilling one of Victoria's wishes - we'll go on a short cruise around Auckland, which Victoria is waiting for with huge excitement :)
Thank you everyone for all your support, wishes and prayers at this difficult time.
This Wednesday (2 May) morning NZ time Victoria will have another MRI scan, which we are very nervous about. The results of this scan will determine whether Victoria's treatment will continute - if the disease has progressed, this means (as the doctor reminded us many times) that the treatment is not working and there is no point continuing it. There are no other effective treatments available. We will greatly appreciate your prayers for good results.
We also want to sincerely thank everyone, who has supported us with yummy groceries (the doctor is very surprised at how well Victoria is recovering her weight :). We were also visited by people from Auckland's Russian Orthodox Church (father Alexandr, mother Ksenia, Pavel and Olga), we had a good conversation with them, Victoria learnt some origami and they also brought vast amounts of tasty and healthy food gathered by people at the church. Thank you so much!
Victoria has started her third week of chemo. We are in the small room again, without kitchen and it is hard for everyone. She did have some nice trips around town
(to museum, to MOTAT and garden) and really enjoyed it. Thanks, Maria.
Maria Vysotskaya :
9 March 2018
Victoria is 7 today! She had her chemo and two blood transfusions yesterday. Today she has visited amusement park and loved it. Thank you so much to Katerina Freeman. She was so happy! (It was actually one of the things on her wishlist). Thank you everyone for birthday wishes and presents and all of your support!
Victoria had finished her radiotherapy and will start her 3 weeks chemo today. She is more tired, has more nausea and not sleeping well. But she is still happy sweet girl.
Photo: This is Victoria's radioteam and jar with her butterfly ( 1 for every radio).
Hello everyone,
We've heard back from our medical oncologist about the MRI results and they are "mixed". The good news is that the spine has cleared up well after the radiation and one suspicious-looking spot from previous MRI is gone (the doctor is satisfied that the treatment is probably beneficial to some degree). The bad news is that there are a couple of places in the brain that weren't picked up earlier, but now in retrospect it's clear that they are tumours. One is controlled (meaning it hasn't grown since the last MRI), but the other one has grown (not responding to treatment). The doctor suggested that having more radiation to the area that's not responding might be possible and worth doing, so we are going to further discuss this with radiation oncologist. Unfortunately, radiation often comes with longterm side effects and the more of it the worse the side effects are, but the doctor reiterated that curing Victoria is unlikely and we are talking mainly about giving her more time. "Mixed" indeed.
Victoria remains in good spirits (not grumpy anymore) and has been pretty cheerful and sweet throughout the day (she even woke up from anesthetic in good mood, which is a rare thing). And for the time being we're continuing with the current treatment.
Thank you all for all your prayers and good wishes and all of your support in general! It's a tough fight and it's great to feel this support.
Hello everyone,
Victoria is back for the next treatment cycle and also a disease evaluation via an MRI of the head and spine, which she should have tomorrow morning. This is a very anxious time for us, as it's been 3 months since the last MRI and with Victoria's prognosis things can worsen quite quickly, so we have absolutely no idea what the MRI will show and would appreciate all your prayers for this. Frankly, even the start of the week has been pretty stressful, when we arrived at Ronald McDonald House, it turned out that all of the rooms with kitchens are fully booked, so we're having to stay in a small room with just a couple of beds in it, this makes it much more difficult to feed and entertain Victoria. We've been put on the list for a bigger room, but it is currently unknown when one will come free, we would also appreciate your prayers for this.
On the bright side, Victoria has been feeling fairly well and enjoyed her time at home, although she started getting grumpy nearer to going back for treatment. She spent time in the garden, went to the school playground, and we even went for a short trip to the beach in the evening when there were less people around and she splashed her feet in the water a bit.
Happy New year everyone! Victoria is starting her next 3 weeks chemo rounds today. Please, pray for her and keep us in your thoughts, Maria.
Hello everyone,
We are glad to be home for Christmas :) A big thank you to all the Santa's helpers and fairies for all the lovely presents for Victoria! She was very happy to get the things from the list she sent to Santa Claus :)
Thank you to everone who helped get our garden ready before our return! Also thank you for all the support we've seen from you guys throughout the year!
Merry Christmas and Happy New Year to all of you from our family!
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Hello everyone,
Victoria has finished her two weekly cycle last week and is now starting her 5-day cycle. Today her blood counts show that her immunity (and platelets) is again very very low, so much that we have to pause her oral chemotherapy to give her a chance to recover. But otherwise she seems to be doing OK, getting really excited and counting down to the day she can go home for a break. She has to wear a mask pretty much everywhere outside of our room, but she's really enjoyed getting lovely presents, going for walks, went to a Christmas party where she rode a pony and a horse! and being invited for a lovely visit where she fed the ponies, patted a cute duckling and worked on a digger 😄 among other things. She had some very happy time, a big thanks to you guys! Her weight and appetite also remain pretty good (other than on occasional days when she feels nauseous), we also want to thank everyone for all the presents, financial help and the yummy food and groceries, it really helps feed Victoria (and her parents) a great variety of healthy nutritious foods.
Hello everyone,
Victoria has finished another week of head infusions in Auckland and is now back home. She is less coordinated and her appetite has noticeably decreased today (she is saying that food tastes metallic - this is a common side effect of chemo), but she is mostly feeling OK. She is really enjoying the time at home, coming up with various creative ideas, playing with her favourite toys and spending time in the garden.
Unfortunately I caught something viral on the plane and am now spending time isolated in a separate room, away from the rest of the family, particularly Victoria (as her immunity is again very very low). Please pray that she doesn't catch it. Thanks, Vladimir.
Hello everyone,
Victoria has gone through the first week of infusions into the brain (had only 4 due to short week) and that seems to have gone alright. The procedure is painless for her (we put numbing cream on) and lasts around 15-20 minutes (she just gets a bit tired from having to sit still and straight for all that time). It goes without saying that her blood counts have dropped again, she might need transfusions and her immunity has again come down a lot. The only concern the doctor had was that her heart rate slowed quite a bit after each infusion, so they did an ECG and kept us at the hospital for longer. She has been feeling a bit more nauseous with this newly added chemo, but not too bad and she is still eating fairly well. A special thank you to everyone who has brought us all the yummy food, Victoria has gained back a good amount of weight and is getting close to 20kg (around what she was before being diagnosed)!
Tomorrow she will have an MRI scan of both her head and spine to see how things have gone over the last couple of months. The tricky part there is that this time she will not have a general anesthetic and will have to lie still for about 1.5 hours in a noisy and narrow MRI machine. The plan is to give her a short break in the middle, but still that's a very long time even for an adult and we're not sure how she will manage. We would really appreciate your prayers for both Victoria being able to lie still for the necessary amount of time and of course for the results.
Once again we want to thank you for all your support, it helps us a lot! Thanks, Vladimir
Hello everyone,
Victoria is now back in Auckland after having almost a week at home to recover from her operation. She has enjoyed her time at home immensely. Her appetite still seems quite good, and she shows interest in a wider variety of foods, though there are days, when she gets more nauseous. She slept better, played with her toys and went for walks around the garden (thankfully the weather was really great for a couple of days).
Tomorrow we should start the first round of intraventricular infusions (into the brain) using the reservoir implanted during the operation and that should go on for 5 days (though the doctors weren't sure how this will work with short week). Given that this is the first time the reservoir is going to be used and it's the first time they are going to be performing this procedure, we're understandably anxious and would appreciate your prayers.
Vladimir
Note from Chris/Anna: We are asking to extend the duration of this Givealittle page due to Victoria's ongoing need for support at this time. Thank you for your amazing donations they are much appreciated.
Hello everyone
Victoria has finished her radiation treatment for the neck and had a lovely sendoff from her radiation team. She has started on some of the new chemo treatment, some of it will have to be added after a bit of time to give her time to recover from radiation and surgery. The surgery to put in the reservoir is scheduled for tomorrow afternoon (possibly around 3pm), and we would greatly appreciate your prayers for it - the complications are not very frequent, but if they do occur they can be quite bad.
Overall, even though Victoria is a bit tired from radiation and can occasionally get grumpy (yes, hard to believe, I know), she is in good spirits thanks to some great time and adventures she's had recently, her appetite is improving and she is enjoying some very yummy food. Once again we want to say a great big thank you to everyone for all your amazing kindness and support!!! It is very real and it lifts our spirits and gives us strength!
Vladimir.
Hi everyone,
The last several weeks have been a bit whirlwind of uncertainty, but we're getting a somewhat better idea of next steps. Victoria has started radiation treatment for the metastases in her neck. She is going through it well, lying very still without the need for general anesthetic, not complaining about anything and she has a good rapport with her very friendly radiology team.
We have also heard back from Victoria's doctor and it sounds like she's been very active and made great progress in setting up Victoria's post-radiation chemo treatment based on a promising European trial. We are very thankful to her for this. It has to be said that this trial is not a magic cure, but from what we know, we believe it may be a very worthwhile option to try for Victoria. We'll have a further catch up with the doctor next week to discuss the details, but it looks like Victoria is already scheduled for a surgical implantation of Ommaya reservoir - in layman's terms it's a version of port for her head, so that chemo can be administered directly into the ventricles and spine. This is planned for 12th October at this point.
In less medical news, Victoria has had a magical visit from a real tooth fairy yesterday and she truly had a magical afternoon. She donned a costume of her favorite dragon Toothless and became the fairy's helper, secretly visiting a house and exchanging a tooth for a coin. They then proceeded to a toystore open just for Victoria and with magical fairy coins they bought literally heaps of wonderful toys, they had a magical Toothless themed cake and played games. Victoria was incredibly happy, chatting about it into the night (and actually still is today... she's exploring all the toys, singing to herself, discussing the happenings of yesterday with us and oh she's so excited!). In contrast to Victoria, we were literally left speechless, I don't think words would be enough to describe how we feel about this lovely, lovely gift of happiness, how amazed we are by all the wonderful people behind it, how overwhelmed we are by ALL the kinds of support and love that we see from you!!! I wouldn't be saying enough, but you truly are making this world a better place, our deepest and sincerest thanks to you!!!
Cheers,
Vladimir
(Copy and paste into your browser to see Victoria's latest adventure:-)
Hi everyone!
Thank you for your all support that we got through these hard times.
Unfortunately, darker times came for us.
Victoria is incurable (her oncologist had told us that she will have one or several month to live and tried to send us home).
We are not ready to gave up right now. So, we hope to start neck radiotherapy for her next week (if we are lucky it will clean her mets area). And we were told ( by oncologist from Europe) that another chemo can be beneficial in her case. We will need our oncologist to agree to do it, as at the moment she is not interested, as Victoria's chances are so slim ( not 10%, probably 1% or 3%, who knows). Even it will just give us time with her, we would like to try. She wants to live, so we will push for treatment. As we don't know what will be around the corner as we go down this road, we are asking to help us, if you can.
We need a miracle !!! Thanks, Maria.
To donate, please use her givealittle page.
She is a beautiful little girl and will be in my prayers💔. All my love to your family.
Unfortunately, the second MRI scan confirmed that both spots in the spine are cancer. We've had a meeting with a radiation oncologist and agreed to try and re-irradiate the affected area. This might help clear those specific spots, but of course won't get rid of disease (metastases can come up anywhere). We'll then try a different chemo protocol, but chances of survival are extremely low, it would take a miracle. Even knowing this, we'll continue fighting for our beautiful daughter. Please pray that oncology team will be more supportive of us in this fight.
Keep strong. I cannot imagine how devastating this must be but hold hope for your beautiful girl and have some comfort knowing so many others will also be doing the same x
Victoria is going to have another MRI scan on Monday. They are going to have another look at the spots in her spine that were found in the previous MRI. This is because in a group discussion of the results one of the radiologists has expressed some doubt about it definitely being cancer (all the others were agreed that it was). Our oncologist has made it pretty clear that we shouldn't have false hopes about this and it's just following due diligence process - chances of it not being cancer are microscopic.
Nevertheless, as unlikely as it is, we would like to ask everyone to pray for a miracle.
In the mean time we are searching through treatment options. Please pray for us finding something that will help and for the doctors' cooperating with us (we've already seen this ourselves and a number of parents have confirmed that the doctors will not be keen to help us look for trial treatments).
Hello everyone,
Sadly we've received some very awful news today. Victoria's MRI scan showed a couple of new metastases in her spine. What this means is the treatment hasn't killed the cancer and the fact that it showed up so soon means that it is also very aggressive. There aren't many treatment options left from here on, we'll probably be meeting with radiation oncologist tomorrow regarding palliatively treating the spot where the metastases are. And we'll be meeting with our oncologist on Monday to discuss any remaining options. The options are to just manage it palliatevely (basically try to slow it for as long as possible) or to look for new trials. The oncologist tells us that the chances of survival now are less than 10%. In terms of trials, there are several, but none available in New Zealand as far as we know, and obviously no one can guarantee if they help.
We pray for you and for Victoria. Please keep fighting...
Hello everyone
Victoria is back home for recovery from her latest chemo treatment. This is her last planned chemo (meaning that she has finished all the 7 chemo cycles that are prescribed by the treatment protocol she was going through). Next week Victoria has lots of tests scheduled, these include MRI and lumbar puncture, hearing, eyesight, lung, neurocognitive, endocrine tests. All of these are very important, but the first two we are the most anxious about (we now even know a new word: scanxiety) as this checks specifically for tumour growth. We would greatly your prayers for good results from these and all the other tests!
We are all pretty tired (I think all these months are really weighing in now), but it's good to have achieved this milestone and we're very hopeful that she will not need any more treatment. Victoria is also very tired from treatment and gets more upset every time she has to have another port access, injection or other unpleasant procedures. She is enjoying time at home though and is becoming partial to peppermint tea :)
Once again thank you so much everyone for all your support: encouragements, prayers, financial, practical, gifts, cards!!! It really really helps!!!
Hello everyone,
Victoria is getting ready for the second part of her chemo cycle. She's had a bit of a tough day today, they had to retry accessing her port (to do blood test) three painful times today and they had to have three goes at putting in another NG tube (she vomited it out over the weekend). Her blood tests showed that her bilirubin and liver ferments are still elevated, so please please pray for them to get low enough to start the next part of treatment on time as well as for wisdom and skill for nurses and doctors.
She did have some nice quiet days at home, where she didn't need to worry about going to hospital, injections, blood tests, etc, which was great.
A big thank you to everyone for your financial support, prayer support, presents, cards and wishes of health!
Hi everyone,
Victoria is starting the next cycle of chemo today. She's had a fairly quiet week and a half (which is good) and even managed a short trip to the beach for a walk and a breath of sea air (last time she did that was more than 7 months ago, so she really enjoyed it). Generally she is feeling OK, and although she occasionally feels sick, we haven't had any vomiting for almost two weeks now. We did notice that her eyesight has deteriorated and we are talking to the doctors to do some additional checks to see how serious it is (your prayers for this would be greatly appreciated).
Please copy and paste this link into google if it doesnt work, Thanks Anna.
Hello everyone, it has been a pretty draining week, so thank you all so much for all the support: for meals, lifts home, prayers, words of support! Victoria is still in hospital and the doctors still don't seem to be in agreement regarding the exact problem (they still seem to be debating between typhlitis and appendicitis). She needed another transfusion today and still has tummy aches, but the good news is that she hasn't had a fever for a few days and her immunity is sloooowly beginning to recover - still a long way from minimal safe levels, but no longer 0! Tomorrow she can finally have a CT scan to help figure out where the problem is exactly, we would greatly appreciate your prayers for the scan and for wisdom for the doctors.
Thanks Vladimir.
Maria Vysotskaya...
We're still at the hospital. Doctors still don't know what Victoria's infection is, but suspect it's tiflitis - a pretty bad life-threatening one (inflammation of the gut, which can sometimes happen in people whose immunity was killed off by chemo). They have changed the antibiotics, but even that doesn't guarantee success as her body doesn't have anything to fight it with.
We would very much appreciate continued prayers, at the moment especially for getting over the infection and getting back enough immunity. She has also vomited out her NG tube tonight, so please pray that putting a new one in goes smoothly tomorrow (it's a very distressing procedure for Victoria).
Hi everyone, Victoria is about to start her next chemo cycle and it's going to be another tough one. She has had a lung function and an audiology test, then an MRI and lumbar puncture tomorrow and getting admitted on Wednesday.
The lung test wasn't conclusive (Victoria was a bit tired, but looks like they also had some trouble with the testing machine), we might try to re-do. Audiology test has shown some high frequency hearing loss, which shouldn't affect her everyday verbal communication, but may get worse after the next chemo round or as time progresses.
Overall Victoria is in a good mood and is even looking forward to her admission, since this means she can watch lots of cartoons. She's had a great trip up with the flight crew being really great to her (a big thanks to them!) and letting her sit in the pilots cabin for a bit and giving her a goodie bag with cookies and lollies. On arriving she's even demanded a bit of "real" food and had a little spaghetti.
Please pray that the MRI and lumbar puncture go well tomorrow and come up clean. Please also pray that Victoria goes well through this upcoming cycle and for protection for her hearing (from dropping further), nerves and from all other side effects.
Today Victoria had her 7th injection, so she is finished with them for now, which she is pretty happy about. She's also had her blood test done today and while pretty much all the counts are abnormal, they are not too bad. Her next (more thorough) blood test will be on Monday. Both her immunity and weight remain low, but they aren't dropping either so that's a good thing. She gets tired very quickly, but she is also very eager to play with play-doh, draw and occasionally goes for short walks out in the yard when the weather is good. Overall she is enjoying her time at home. Thank you everyone for all your prayers!
A big Hi to Victoria from Aramea. She thinks about you heaps. Aramea loves your panda outfit :)
It was a busy couple of months for us: we've now got some really good news from MRI(MRI before 1st chemo), the radiotherapy has worked well and destroyed the remains of the original tumour and all metastases!!! There are a couple of spots that the doctor wants to keep an eye on, but she is not too worried about them at the moment.
Then we had 2 chemotherapy cycles. Victoria's had a birthday and her port had to be replaced on her birthday.
At the moment Victoria is struggling to eat, so she has a feeding tube and has the feed running around the clock. Her blood counts go down alot after each chemo cycle and barely have the time to recover before the next cycle begins.
5 more cycles ahead, so, please, pray for her.
Next MRI will be on 18th of April and the 3rd chemo cycle will start from 19 of April.
Thank you so much everyone for your support.
And Happy Easter!!!
Cheers,
Vladimir
Victoria had a safe flight from Auckland to Wellington and has been at home for a week now. She still feels unwell after radiotherapy: she continues to lose weight because of the lack of appetite, she does not sleep well, has headaches and nausea, tiredness and weakness, itching skin in the areas that received radiation. However, her mood is generally good, she is very happy to be in the familiar home environment. She plays toys, games and Lego, reads, colours pictures, plays in the garden in good weather. Victoria is full of creative ideas and she performs mini-concerts for her family members, she started compose songs – both words and music - accompanying herself on ukulele. Once a week she will meet with oncologist in Wellington. It is planned that Victoria will stay at home for some time before she flies to Auckland for more tests and chemotherapy. Her immunity stays low so the number of contacts with people has to be maximally limited to avoid infection. Victoria is a very active child, she wants to run, jump and dance but has to be restricted to quiet games to avoid falls and trauma. Great thanks to everyone who supported Victoria with prayers, practical and financial help during radiotherapy. It is impossible to express with words how it helped during that most difficult time.
Victoria with her Mom and Santa's gift - the talking bird. Victoria immediately taught her to say: I love you!
Vladimir and Maria would like to say thank you for the encouraging words and many kind donations that have been made. They are overwhelmed by your generosity.
Photo - Victoria with the penguins.
